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Patients Can Squawk, But We Have Little To Crow About Open Data

Posted on June 15, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

One of the biggest disappointments at this year’s Health Datapalooza (which I found disappointing overall) was the continued impasse presented to patients who, bolstered by the best thinking in health care as well as Federal laws and regulations, ask for health data stored about them by doctors and other institutions.

Activists such as Regina Holliday and e-Patient Dave proved years ago that giving patients information and involving them in decisions will save lives. The Society for Participatory Medicine enshrines the principle. But the best witnesses for patient empowerment are the thousands of anonymous patients, spouses, parents, and children quietly trundling folders with their own records through the halls of hospitals, building up more knowledge of their chronic conditions than any professional clinician possesses, and calmly but inflexibly insisting on being equal partners with those who treat them.

There were plenty of high-minded words at the Datapalooza about patient rights to data. It was recognized as a key element of patient empowerment (or “activation,” as the more timid speakers liked to say) as well as an aid to better care. An online petition backed by an impressive array of health reformers is collecting signatures (whom someone will presumably look at) and encourages activists to speak up about this topic on July 4. HHS announced that anyone denied access to data to which the law gives her a right can submit an informal report to noinformationblocking@cms.hhs.gov.

Although occasional mention was made of personal health records (PHRs), most of the constant discussion about interoperability stayed on the safe topic of provider-to-provider data exchange. Keeping data with health care providers leads to all sorts of contorted practices. For instance, patient matching and obtaining consent are some of the most difficult challenges facing health IT in the U.S., all caused by keeping data with providers instead of the patients themselves.

The industry’s slowness to appreciate patient-generated data is also frustrating. Certainly, the health IT field needs to do a lot more to prepare data for use: consumer device manufacturers must assure clinicians of the devices’ accuracy, and researchers need to provide useful analytics that clinicians can plug in to their electronic systems. Still, doctors are demonstrating a disappointing lack of creativity in the face of this revolutionary source of information. It’s all to easy to carp about accuracy (after all, lab tests have limited accuracy as well) or just to state that you don’t know what to do with the data.

I heard about recent progress at the UK’s National Health Service from Brian Ahier, who is the only person I know who can explain the nuances of extensions to FHIR resources while actively using both his laptop and his cell phone at the same time. Ahier heard at a UK-US Bootcamp before the Datapalooza that the NHS has given 97% of its patients access to their records.

But there’s a bit of a caution around that statistic: only one-fifth of the patients have taken advantage of this right. This doesn’t bother me. First of all, one-fifth of the population with access to their personal records would be a dizzying accomplishment for most countries, including the U.S. Second, few people need access to records until some major problem arises, such as the need to see a specialist. They probably feel relieved to know the records will be there when needed.

Another aspect of patient control over data is research. The standard researcher-centered model is seen as increasingly paternalistic, driving patients away. They’re not impressed with being told that some study will benefit people like them–they want to tell researchers what really matters to them as sufferers, and hear more about the study as it goes along. Researchers are frantic to reverse a situation where most studies fail simply because they can’t sign up enough subjects.

The Patient-Centered Outcomes Research Institute (PCORI) is one of the progressive institutions in health care who understand that giving patients more of a say will be increasingly important for signing up patients in the first place, as well doing research of value to them. Its PCORnet combines traditional research databases with databases maintained by patient advocacy groups. Each member network can create its own policies for getting consent, which allows researchers to bend with the needs of their research subjects.

OpenClinica, the open source clinical research platform, just announced the release of an app that may contribute to the goals of taking input from patients and binding them closer to the research endeavor.

Public health officials also recognize the sensibilities of the people they monitor. At a panel on data about low-income people, speakers stressed the importance of collecting data in a respectful way that doesn’t make people feel they’re being spied on or could be punished for their behavior.

Let’s talk a minute about health care costs, if only because doctors and insurers don’t want to. (Some doctors are prohibited by their employers from telling patients how much a recommended procedure will cost, supposedly because they don’t want costs to intrude on what should ideally be a clinical decision. This is changing with the increase in deductibles, but often the doctors don’t even know what the final cost will be after insurance.)

One app so admired by the Datapalooza team that they allowed the company to demonstrate its product on the main stage during keynote time was Sensentia. This product everybody is so impressed with takes in information from health plans to allow patients as well as the staff at health care providers to quickly find the health plan benefits for a procedure. (I recently covered another company doing similar work with insurance and costs.)

Sensentia is a neat product, I am willing to aver. It accepts natural language queries, crunches the data about health plans and insurers, and returns the actual health plan benefits for a treatment. Of course, I know the cost of flying from Boston to San Francisco after six clicks in my browser, even though the calculations that go into offering me a price are at least as complicated as those run by health plans. One may be shocked to hear that that current phone calls to an insurer cost $3-$10. This is the state of health care–it costs more than five bucks on average for a doctor just to find out how much it will cost to offer his own service.

A panel on patient-generated data reported more barriers than successes in getting doctors to work with data from patient devices and reports from everyday life. Another panel about improving quality measures culminated in the moderator admitting that more patients use Yelp than anything else to choose providers–and that it works pretty well for them.

For me that was the conference’s low point, and a moment of despairing cynicism that doesn’t reflect the mood of the conference or the health care field as a whole. Truly, if Yelp could solve our quality problems, we wouldn’t need a Datapalooza or the richness of data analysis it highlights. But I think reformers need more strategies to leap the hurdles we’re facing and implement the vision we all share.

HealthTap Offerings Track the Evolution of Health Care

Posted on August 15, 2014 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

Health care evolves more quickly in the minds of the most visionary reformers than in real health care practices. But we are definitely entering on a new age:

  • Patients (or consumers, or whatever you want to call them–no good term has yet been developed for all of us regular people who want better lives) will make more of their own decisions and participate in health care.
  • Behavior change will be driven by immediate interventions into everyday life, and health care advice will be available instantly on demand instead of waiting for an annual visit to the doctor. Health care will be an integrated into life activities, not a distinct activity performed by a professional on a passive recipient.
  • Patient information will no longer be fragmented among the various health care providers with whom the patient comes in contact, but will be centralized with the patients themselves, integrated and able to support intelligent decision-making.
  • Mobile devices will be intimately entwined with daily behavior, able to provide instant feedback and nudges toward healthy alternatives.

I have seen this evolution in action over several years at HealthTap, a fascinating company that ties together more than 10 million patients a month and more than 62,000 doctors. I interviewed the charismatic founder, Ron Gutman, back in 2011 before they had even opened their virtual doors. At that time, I felt intrigued but considered them just a kind of social network tying together doctors and patients.

Gutman’s goals for health care were far greater than this, however, and he has resolutely added ratings, analytics, and other features to his service over the years. Most recently, HealthTap has moved from what I consider a social network to a health maintenance tool with continuous intervention into daily life–a tool that puts public health and patient empowerment at the top of its priorities. And it may go even farther–moving from seeking help on illness to promoting health, which Gutman describes simply and winningly as “feeling good.”

The center of the offering is a personal health record. Plenty of other organizations offer this, most famously Apple’s HealthKit. HealthTap’s personal health record is unique in supporting the service’s search feature, where patients can search for advice and get results tailored specifically to their age, medical conditions, etc.–not just the generic results one gets from a search engine. It also ties into HealthTap’s new services, including real time virtual consults with doctors.

09-TAKE-ACTION-Customized-Checklists-HealthTap
Sample update from HealthTap

Gutman is by no means interested in maintaining a walled garden for his users; he is looking for ways to integrate with other offerings such as HealthKit and with the electronic health records used by health providers. He says, “The only entity that will win the game is the one that adds the most value to the user.”

Other new features tied in to the HealthTap services include:

  • A recommendation system for apps that can improve health and well-being. The apps are rated by the doctors within the HealthTap system, must be in Apple App Store or Google Play, and must be approved by the FDA (unless they are part of the large, new category of apps that the FDA has chosen not to regulate).
  • Off-the-shelf checklists to help patients manage medication, keep track of healthy behaviors, etc. As part of HealthTap Prime, a concierge service ($99 per year for the first person and $10 for each additional family member), the user can get personalized checklists from doctors, as well.
  • With the concierge service, subscribers also have the opportunity to directly contact a doctor any time, 24/7, on all popular mobile platforms, using live video, voice, and text.
  • The “Get Help” module in the HealthTap app provides useful checklists through all mobile devices, and even Android wearables. Patients can get reminders, useful links to relevant content, and other content pushed to their devices, at a pace they choose.

Some of these features–such as the recommended apps and personalized checklists–go beyond advice and constitute a type of treatment that is subject to legal liability. HealthTap has covered all its bases insuring doctors have insurance against mistakes.

The numbers show that HealthTap is a big community; comments received from Gutman about patients who say they’ve saved their lives show that it is an effective one. I think the choices they’ve made are insightful and illustrate the changes all health care institutions will have to make in order to stay relevant in the twenty-first century.